So discouraged...

[lisiamc]

I feel like I should be at a 12 step meeting. "Hi, my name is Lisa and it's been 11 weeks since my last erosion." Except that's not true any more. Last night I had two erosions, one quite severe, and about two hours later, a second one, somewhat milder. (It was the pain that woke me up, both times, and my eyes were still closed, so it must be when my eyes start moving around in my dreams that I get into trouble.)

I haven't had more than two and a half consecutive hours of sleep since February. I was starting to think I might be safe to graduate to re-gooping every three hours, but last night I'd only been asleep for a little bit over two hours when the first one happened, and about an hour for the second one.

Last night I put in Clinitas Ultra 3 drops, did the warm compress for about 15 minutes, then some Genteal gel, and my goggles. I hadn't had an alcoholic drink all weekend, but I did drink plenty of water. I'd blame it on the colour of my socks, but I wasn't wearing any!

I was beginning to believe that maybe I was getting better, and now this happens. The only plus is that this time my vision is only impaired the tiniest bit, and I'm able to go to work today. And the only pain left is a nagging foreign body sensation, which is annoying more than painful. So I guess I'll live. But I am just so discouraged.

Lisa

[Guest]

(((( Lisa ))))

I am so sorry to hear that you have experienced yet another erosion.

The thing that is most difficult to deal with about RCE's is that they seem to sneak up on you without warning.

I have spent most of today on the couch with an icepack on for much the same reasons.

I can't offer you a great deal of advice but can tell you that after my laser eye surgery, I too didn't get much more than a few hours sleep at a time.

It does get better, believe me. I still goop up every night and if I wake during the night use the opportunity to reapply. But I must admit that now my erosions mostly occur in the morning when I wake, so I keep a little pod of saline beside the bed to wet my eyes before I try to open them.

I wish you continued healing.

Warm regards

Ian

[liz56]

Oh, Crap!

Lisa,

This story sounds just like mine. I was on osmotic drops for six months and still getting erosions. It really did take a long time. What you note about your vision being less affected is also something that happened to me. So, you are seeming to conform to a similar trajectory to the one that I was on.

Hang in there! You are doing all of the right things. I hope that before long you will "graduate" from the sleep interruptions. I know exactly what that is like and was always envious of people who had morning erosions, because at least they got a whole night's sleep. It is really a stress on the system to have sleep disrupted so much.

A agree with Ian. Things will get better, and judging from the less-affected vision part of your description, it sounds like they are.

Thanks for keeping us posted.

--Liz

[lisiamc]

It really does help to know that there are other people who have been through this too.

Ian, I'm sorry you're having a bad day too. I hope the ice has made you feel a bit better by now.

Liz, I've been following your blog faithfully. When you write about things improving for you, I feel like there's hope that they might improve for me too eventually.

It seems like such a long road sometimes, waiting for healing to happen.

Thanks for the sympathy and kind words, both of you.

Lisa

[Teri]

Hang in there

Lisa,

I am so sorry to hear about your RCE's. I, too, have been where you are (RCE's at random times in the night, no sleep for months). You will find a way to quiet the erosions and get your sleep (and sanity and life) back.

So hang in there and know that we're thinking of you.

Teri

[lisiamc]

Thanks Teri

Everyone's caring words are making me feel so much better. There are a lot of inspirational people on this forum - I'm grateful to have this as a resource.

Lisa

[Hangus]

Lisa
i know it sounds mad but one of the main things that helped me deal with this was initiating a form of eye opening discipline. I went to sleep with the express instruction in my mind not to open my eyes until I say so! After a while I got to the point where, apart from sudden shocks/noises, i never open my eyes until I am ready. This is usually after putting a few drops in to free the gunge or to rub my eyelid gently to separate it. Sounds nutty but it works!
keep your chin up it does get better
Barry

[Mcgoldilocks]

Hello my name is Lindsey and I'm a RCE sufferer. It's been 2 weeks since my last erosion.

What should one do after a setback? Medically speaking, follow the advice everyone else has already given you and keep doing the intelligent things you're already doing. Psychologically speaking - make sure you give yourself a big treat/pat on the back to counter the sadness and discouragement you're feeling.

Arrange a fun evening with friends, a picnic, go see a film by yourself and get 4 scoops of Haagen Dazs with extra chocolate sauce and sprinkles. Buy a REALLY trashy book by your favourite author, wrap yourself up in blankets and distract yourself with as many fun wonderful things as you can.

You had an 11 week break, let's hope the next break will be 22 weeks.

[lisiamc]

get 4 scoops of Haagen Dazs with extra chocolate sauce and sprinkles.

Can I make that a whole pint of Pimms and lemonade, with some strawberries and mint? Today would be a perfect day for it. I'm sure I'd pay with a bad case of drinker's eye. Anyway, I never turn down an excuse to eat Hagen Daas!

Thanks, Lindsey. I've been following your blog avidly too. And Barry, you're doing really well lately - I'm so pleased for you.

Everyone has been so supportive and kind. I feel a bit guilty for whingeing. I got a little more more sleep last night, in 90 minute doses, so I'm feeling more like a human being today. Thanks everyone, it really does help to know you're here.


Lisa

[liz56]

Lindsey and Lisa,

I really enjoy your humor!

Lisa, I'm glad to hear that you are having a better day today than yesterday!

--Liz

[Mcgoldilocks]

Can I make that a whole pint of Pimms and lemonade, with some strawberries and mint?
Lisa

Make it a pint of Flaxseed oil and I'm there!

[lasiksurvivor]

May want to seek professional help

The lack of regualr sleep is very disturbing and may be a sign you are heading for some serious psychological stress. The sleeplessness I had which was very similar to yours preceded a near nervous breakdown. I was very lucky that my sister who is in the medical profession got me help from a very very nice psychologist who helped get me back on track by prescribing medication for my obsessive compulsive behavior regarding my dry eyes and vision problems. I really don't know if I would have made it without her help. DO NOT BE AFRAID OR ANXIOUS ABOUT SEEKING PSYCHIATRIC HELP IF YOU NEED IT. I stayed up many a night like you and then one day just totally broke down. I don't want to see that happen to anyone else. The pain and despair was horrible.

Wishing you all the best with your recovery

[eva]

Hi Lisa

I am not sure what an erosion is (it seems to "attack" quickly) but it sounds awful.

I read negative comments about Lacrilube on this Forum, however since it was recommended to me for night time use by the opthamologists at the SS Clinic in Toronto, I continue using it at night.

No one told me to mix it with GenTeal Gel but I do, and it works great for me . Now I don't wake up during the night. Both ointments are preservative free.

One of the things I learned from this Forum is that relieving dry eye symptoms is hit and miss and everyone seems to have a different way of coping and what helps one doesn't help the other.

For example, everyone sings the praise of warm compresses (including the SS Clinic) but it does nothing for me - so maybe just maybe the Lacrilube-GentealGel combination may help. I only had to try it once to know that it was my passport to sleeping through the night. I realise for someone else, it might be a waste of time and money.

All the best.

eva

[lisiamc]

Hi Eva,

Thank you for the suggestion. I'm glad that you've found a mix that works for you. I can see where the Lacrilube would give the Genteal gel a bit more staying power.

I did try Lacrilube early on, but I just don't get on very well with it. It makes my eyelids red, sore and puffy, and makes my eyes feel gritty. I think it's the petrolatum that doesn't agree with me. As bad as it makes my eyes feel, I might have persisted, since my ophthalmologist wanted me to try it for a while, but I read that some people still manage to have an erosion (top layer of cornea sticks to eyelid, RIPS off when eye is opened - ow!) with an eye full of Lacrilube, so I gave up. I have since read about some studies that suggest it's not as helpful for stopping erosions as the high-oncotic-pressure drops like Dwelle and Clinitas Ultra 3. I still think there's a niche in the market for a gel with high oncotic pressure. "Dwelle gel" - sign me up!

Lisa

[Rojzen]

OCD, even if justifiable, is a brilliant direction to follow

Lasiksurvivor's input, here, on treating the sleeplessness and the unstoppable focus on the risk of another erosion as a kind of OCD is, I think, really brilliant. . .I write often, here, about how essential I have found mental health care to be, during the hardest times, but this is the first time I've seen our emotional crisis described in terms of obsessive thought pattern. . .and I'm intrigued and feeling this is a Eureka moment.

If we can only get past the erroneous reasoning that if our eye agony comes with mental agony, this must mean that the physical problem is, somehow, either caused or aggravated by mental problems (I've had my share of mental health providers tell me that I was a hypochondriac, blowing my eye pain out of all proportion), then we can find more useful labels that provide true solutions. . .

Indeed!! when one is having RCEs, and living in fear of recurrences and more pain and debilitation, one is JUSTIFIABLY obsessed with the problem, and JUSTIFIABLY compulsive about finding good prevention methods. . .Just because the mental stuff is justifiable, though, doesn't mean that a good medication or talk therapy for OCD won't work. . .

Another lesson learned for me. Thank you LasikSurvivor! l'm hoping your experience and insight on treating the mental picture REGARDLESS of cause gets digested well, here, and that the many of us facing tremendous anxiety on a daily basis will bring the OCD concept to their health providers. . .